Facing a Terminal Illness, Would You Choose to Maximize the Time Left… or the Quality of that Time?

I know my answer. The quality of my final days is more important to me than the number of days remaining. And I’ve emphasized that point in conversations with my primary care providers — my internist, my urologist who treats my prostate cancer, and my neurologist who deals with my Parkinson’s.

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Fortunately, my cancer and Parkinson’s are not life-threatening at this stage, so I’m not faced with the specifics of making this choice. I wonder how it might actually play out.

One Woman’s Story of Dealing with Terminal Cancer
This week’s “Health & Science” section of The Washington Post features the well-written, moving account by a young woman, Amy Berman, of her fight for quality of life since being diagnosed with a rare and terminal form of breast cancer 18 months ago. Although the five-year survival rate for those diagnosed with breast cancer is approaching 90 percent, only 40 percent of those diagnosed with inflammatory breast cancer (Berman’s diagnosis) live for five years.

At time of the initial diagnosis, her oncologist asked her what her goals were. She responded, “I want to feel good for as long as possible,” adding: “Don’t push to extend my time if I’m not able to have that.” The oncologist suggested that if a body scan showed that the cancer was still confined to her breast, they try aggressive treatment since that approach offered the best hope for both a longer and better life. If the cancer had spread beyond the breast, however, they could opt for a less aggressive treatment that would slow the cancer but create fewer side effects.

The Aggressive Treatment Option
Berman learned that the cancer had spread to her spine, which meant that she “had the worst possible diagnosis.” She consulted the “preeminent expert in inflammatory breast cancer.” After a brief exam, he advised intensive chemotherapy, radiation and a mastectomy, followed by more chemotherapy.

When Berman questioned going through this process, in light of her cancer’s incurability, he replied:

This is not a cure. But if you respond to the treatment, you might live a little longer — although there are no guarantees. All of my patients use this protocol.

Sensing that this specialist was locked into his one-size-fits-all-approach, Berman decided it wasn’t worth telling him why this protocol was totally wrong for her, that she wanted “to work, enjoy family and friends, do things that are important to me — while feeling good — for as long as possible.”

Unfortunately, many patients have doctors just like this specialist. They want to cure, to save lives, to instill hope. But they miss their patients’ own needs and desires. They offer reassurances like “we’re going to treat this disease aggressively” while soft-pedaling the fact that the illness is incurable. Patients like the sound of “treat aggressively,” but Berman, with her nursing background, knows that this approach can leave patients “bruised and battered, wishing they were dead.” Yes, they might live a month or two longer, but at what cost?

Palliative Care
She notes that recent evidence suggests that with certain cancers, patients actually live longer — and better — using a palliative approach like the one she’s chose. She elaborates:

Palliative care is not hospice care, although palliative care and hospice care often occur in tandem. Rather, the focus of a palliative approach is to prevent patients from suffering. It can be used at the same time as cures are being attempted — going hand-in-hand, for instance, to relieve side effects such as nausea. It can be used with chronic conditions, such as back pain. It can also provide comfort and symptom management at the end of life. It’s about proving the best possible quality of life whatever your condition.

Recent studies suggest fully informed patients nearing the end of their lives are less likely to choose aggressive care when they understand what they can realistically expect. They also are less anxious and they rarely end up in intensive care units or on ventilators.

So Berman is nearing two years of living with her terminal diagnosis. She takes an estrogen blocker pill every night and some extra vitamins and minerals. Once a month, she has an infusion to stave off potential problems that might result from the cancer’s ravaging her spine. Shen knows no treatment will work forever. But for now: